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Sunday, March 14, 2010

What if you can't find the PD medications you need for your treatment at a local pharmacy?

For those of us who were born in a time when information on almost everything was not readily available in our homes, it is amazing to be alive when vast stores of knowledge are finger taps away even when we are in our cars or hiking in the park. When our children were growing, we kept a dictionary in almost every room. A phone interruption at dinner time was not acceptable but stopping to look up the meaning of a word was encouraged.

When I was a child, there was an encyclopedia set to put one on the right track or just to read, page by page for the fun of learning about anything. What do you want to know about Anacondas?

Now there is a huge overload of information. We love that. But not all of it is factual. Some is poorly edited or not accurate; some is sound- byte brief and some is just designed to separate us from our money.

Because UCB has not been able to provide positive news about the Neupro patch availablability in the USA as they wait on the FDA, I thought I would continue the search of online pharmacies to see what I could find out there. I found several online pharmacies which list the patch. I noticed was that the patch is very expensive. Because we had no knowledge of the prior US cost of the patch I decided to compare other medications for which I knew the price. They were expensive...not that expensive but at least 25% higher in price. Of course there is also the question of the cold storage delivery. And that is a BIG question.

We began to receive questions about the availability of other medications. These questions were from markets with which we were not familiar. I just did a check on an L-type CCB, DynaCirc CR, availability and communicated with GlaxoSmithKline (GSK) as part of that search. Turns out that despite the fact that they make the product and have offices in Australia, you can't find DynaCirc in there. You can, however, buy it from an online pharmacy in New Zealand, not to mention Israel, Canada and a few other places where I could not verify the online pharmacy.

I also found an online site which will check for some comparative prices and provide information about the pharmacies. Therefore I did a domain search online because it is important to know the company trail - how long have they been operating their site - are they here today but gone when you are entitled to a refund or didn't receive the product they didn't really mail to you after charging your card.

Since this company has been in business since 2002 with a 2008 update, we're passing that backlink along to you with a warning. Although there are several ways to check for information things at the Pharmacy Checker website be advised, they do not list every bona fide online pharmacy, only their clients, and it is possible that they have some questionable clients on-board or at least did at one time.

This problem means that before you use any online company check the domain and also look for scam warnings. Due Diligence on your part.

Not all scam warnings are valid. Some are just from customers who didn't read the shipping charges or the estimated wait time for arrival. Other complaints are very serious. These complaints includethe company shipping the wrong item and labeling it incorrectly; taking money for the brand and getting a generic which while similar might not be the same. And even worse, counterfeit pills. Other scams include charging your card while not actually shipping the itemor submitting charges without authorization.

Companies can charge for shipping on a regular basis when you did not authorize such a program. Another danger is that you might receive out of date medication.

If your credit card is charged for any fradulent reason, report it to your card company immediately as this will enable to limit your obligation and in some cases your card company can bill back to recover your funds. If you reach this point, you can help others by reporting the scam and company to lots of online scam reporting sites and to any governing authority.

You need a prescription for prescription medicationNo prescription required is a red flag!

Another cautionary when ordering from a Canadian pharmacy is to look for the seals of accreditation. Some are real and some are fake. Note the seal and check with the issuer. You can use either of the following links at the Canadian International Pharmacy Association (CIPA) to verify accreditation of the pharmacy you are considering. If you want to verify membership: contact CIPA. They have a similar link under consumer safety. They will also list known sites which display a fake CIPA seal. There are other seals as well. Individual provinces will also require accreditation. As a matter of fact there is also a seal for the

Phone and fax numbers. Give them a call on their 800 number ostensibly to verify their mailing address or shipping & handling fees, whatever. But try calling at an off business hour. Did you get a voice mail? Anything? Nothing tells you to move on. Don't leave a phone number or an email address.

Does the site list an address - although this could be a mailbox company which would provide both street number and suite number they should be a legitimate pharmacy with a regular address. I'm not so sure about companies which have drop shipping.

Do they ask for the prescription - if they don't - let your fingers walk away

Is the price too low to be believed - don't believe and don't buy!

Have you done your due diligence? Are you dealing with a legitimate company?

We wish that Parkinson's medications were available to all patients everwhere at affordable prices for everyone. But the sad fact is then this isn't the case. So we click our fingers on the keyboard and our options are displayed on the screen before us.

Normally we don't publish back-linked company posts but this information is important to the discussion. Furthermore it does demonstrate that not all complaints are the fault of the target but rather unrealistic expectations of the consumer...and yes, we all have those from time to time.

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PARKINSON'S NEWS FLASH and ANNOUNCEMENTS

2013While I've been answering email queries, I have not been posting recently. There is news that I am still processing emotionally but the gist is that there appear to be 2 essential forms of Parkinson's disease.

One form is the motor symptom aspect with which we are all familiar. Symptoms respond to treatment and while the disease continues to progress, quality of life can be clearly improved through treatment: medication; supplements; exercise, massage and speech therapies.

The other form of PD is non-motor symptom predominant and here all bets are off. At this point it is felt that early treatment with sinemet may be much more important than previously understood.

Little can be done for some of the symptoms which makes this form far more insidious because early distinctions need to be made for aggressive treatment in an attempt to save cognitive functions.

More will appear on this blog about non-motor symptom predominant Parkinson's disease but until it does it is important for People with a PD diagnosis to be very proactive with their medical support staff. Caregivers need to be better prepared as well.

I want to also let people know that emails are still being answered promptly as they are a much safer way for us to communicate than posting your phone number or email address in a comment section.

2012We will be seeing the Neupro Rotigotine Transdermal Patch in US Pharmacies before the end of the year - no longer waiting on the FDA . UCB indicates a release time as July 2012October 2011 - A new diagnostic tool has been created by the National Parkinson Foundation. This tool is designed for clinicians but that doesn't mean that your medical team will be aware of this resource which can be accessed online, through an iPhone application, or an Android application. The iPhone app screen shot allows you to link to Planning, to common PD symptoms, Diagnostic considerations and to Treatment considerations.July 27, 2011 - Just a few hours ago it was ruled that Federal Funding for hEsc is not prohibitedby federal law and can continue.View the Webcast from the Midwest and Young Onset Parkinsons Conference on June 18, 2011Want to catch up on past seminars - Expert Briefings - offered by the Parkinson's Disease Foundation?Click HereMay 2011 - Patients Like Me has posted a wonderful way to make the most of appointment time with your doctor. You can take a look at the Doctor Visit Sheet at the PLM website.Parkinson's Disease Foundation sponsored two online seminars. Register for Understanding Pain in Parkinson'sTuesday May 24, 2011 at 1:00-2:00 pm EDT.Complementary Approaches to Parkinson's is scheduled for June 28th. Both seminars are archived at PDFAPRIL is Parkinson's Disease Awareness MonthTuesday March 22, 2011 1:00-2:00pm ET PD Expert Briefing: Cognition and PD: What You've Always Wanted to Know But Were Too Afraid to AskI don't know if it is official but there is a grassroots organization calling awareness toMultiple Systems Atrophy - formerly Shy-Drager syndrome -March is MSA Awareness monthwhich is appropriate because April is Parkinson's disease awareness month.Just so you know: The National MS and Parkinson's disease registries Act (HR 1362/S 1273 was expanded to bcome the National Neurological Diseases Surveillance System Act - It will need our support.Just click the linkto be connected to the PDF archived PD Expert Briefing on "Physical Therapy and Parkinson's: What You Need to Know" Although we have been talking about many of the topics, we learned some new tricks.October 22, 2010FDA has recalled the Fentanyl Transdermal Patch used by some advanced stage PD patients for pain. Some patches have been found to release the active ingredient faster than approved specs. The result can be excessive sedation, depressed respiration, hypoventilation and apnea. Patients on both entacapone (Stalevo) and Fentanyl are already at risk for prolonged CNS and respiratory depression. If you have a family member in nursing care, their facility should be notified of this increased risk potential.October 1, 2010From the Michael J Fox Foundation comes the announcement of the launch of the Parkinson's Progression Markers Initiative (PPMI) Study in with the goal of identifying PD biomarkers. Biomarkers may open the door to "disease-modifying therapies." On November 9, 2010 Michael J Fox was featured in an episode of one of my favorite shows The Good Wife on CBS. After his Rescue Me appearances, we love that Mr Fox has grown as an actor. The new role must have been fun. Did you catch him in a reprisal of the role in February 2011. And here we are in 2013 with the Michael J Fox show Thursdays at 9:30/8:30c on NBC. May is ALS monthJanuary 29, 2010 Margot Zobel, founder of The Parkinson's Unity Walk passed away.You can read moreat the Parkinson's Action Network website: and fromThe Parkinson's Unity WalkDecember 14, 2009The FDA has approved the results of the phase IV clinical trials for Azilect resulting in permission to remove the food (Tyramine) restrictions (except for doses above 150 mgs) for this MAO-B inhibitor, as well as concerns regarding combination therapy with certain medications as well as OTC cough/cold medictions. Read more atTeva Pharmaceutical Industries LtdPDF held an online Expert Briefing "What's in the Parkinson's Pipeline?" Led by Dr David G Standaert the briefing April 20, 2010 This excellent briefing is now online in the PDF archives..... On September 28-October 1, 2010 the Global Quilt of the PDF Quilt Project was displayed in Glasgow, Scotland UK at the 2nd World Parkinsons Congress. It represents the work of people from 14 countries contributing 2'x2' panels using photos, illustrations and other mementos to tell the stories of PD. You can see images of the quilt as displayed at PDF. 9/23/09 Results of the ADAGIO study for Azilect(rasagiline) 1 mg appears to be effective for a disease modifying effect.For MJFF commentary by Karl Kieburtz, MD, MPH9/07/09 Only a few more days before James Bowthorpe completes his round the world cycle for PD. He began in London. You can read about his journey by double clicking here6/11/09 The World Health Organization declared the H1N1 Virus to be a global pandemic. Of note: This flu most common among young healthy adults unlike the seasonal flu. This could change as the virus continues to evolve. For US maps, visit the CDC websiteFor WHO information click here5/6/09 The European Medicines Agency (EMEA) recommended removing restrictions on the Neupro Transdermal Patch for PD and RLS in all remaining European countries.Check for update posts about the USA status within the blog - we add them every few months. There is a Named Patient Clinical Trial in 2011. 3/12/09 Don't miss your chance as a diagnosed PD patient to enroll in the genetic testing program offered by 23andMe,Inc as sponsored by the Michael J Fox Foundation, Parkinson's Institute and Sergey Brin of Google. Links are in the articleand also listed under Clinical Trials (altho this is not a clinical trial it is an opportunity to contribute to research.3/09/09 President Obama signed an exective order to lift the Bush ban on federal support for embroyic stem cell research on Monday, March 9th, 2009.And now in 2010 we are waiting to see if the anti-injunction will be permanently lifted.

About Parkinson's Disease

BEWARE the GLUTAMATE

CoQ10, Vitamin B and essential tremor

It has been established that Vitamin B2 (Riboflavin) and high doses of Vitamin B12 can work with CoQ10 to ease tremors.

You can take Vitamin B complex and CoQ10 together at the beginning of the day when you take your first CoQ10.

Do not overdo the B complex vitamins; to avoid forcing your kidneys to overwork eliminating the excess and high doses are contraindicated for some cardiac patients.

Remember that if you are taking levadopa, you may need to time your B6 (pyridoxine) or B complex vitamins carefully. You can still take them separately...especially B2 (riboflavin), B3 (niacin), B9 (folic acid), B12 (cobalamin).

Whether on levodopa or not, the complex can be beneficial to sleeping. A good B complex is also the most economical way to go. The B's are probably most effective when taken a liquid or by injection rather than in tablet form. Capsules are usually better than tablets because they can be easier to swallow and have fewer excipients. There are also effective sublinguals.

EXERCISE REGULARLY to OFFSET PD SYMPTOMS and TO FEEL BETTER

Don't be afraid to try the exercises you find in the margin or articles. Check indices for specifics. Begin with ones which you feel are possible. If you have space or flexibility issues, try another. These exercises are for symptoms you might have now or develop. For PD you need to repeat exercises regularly because the disease continues to work against improvements. And what if they help you to breathe better? To sleep better, to swallow safely? To find ways to maintain your balance? To button your shirt? What if...Those endorphins are waiting for release.

Exercising

on the Total Gym

Tennis ball Hand Exercises -Stretching

To relieve stiffness: Insert ball between fingers as far as you can. Repeat between each finger. Stretching NOT squeezing is the important element of this exercise. Your goal is to prevent muscle tightening.

Yawning As Exercise

A full open-mouth yawn will open your throat - tilt your head back, yawn and feel what happens

ooo O aah A eee

A good exercise for doing in the morning and at night or anytime to open the throat and exercise those swallowing and speaking muscles

Swallowing Problems ???

Try CHEWING GUM...

It's a good workout for the jaws and the throat to improve your ability to swallow. It can help dry mouth but not as much as hard candy or ice chips.

Posture and Gait as a symptom of PD

Lack of arm swing - foot drag - shoulder stoop - small stwps

TURN UP THE VOLUME

An exercise to add adding volume when speaking:

Place your hand on your diaphragm- the stomach area-when reading aloud-that way you can feel what is or is not occurring.

Feel the in-out movement as you breathe? This tells you that you are projecting your voice using your diaphragm, propelling the air from your lungs, rather than speaking from the "top" of your chest..

Little or no movement tells you that you are using your breath alone and not the muscles which propel that air from your lungs. You may not have to speak to the back of the hall, but you might need to speak across a room or even across the table. And don't you hate being asked to repeat yourself?

* * * * * * Smiles * * * * * *

Some people are working backstage, some are playing in the orchestra, some are on stage singing, some are in the audience as critics and some are there to applaud.

Know who, when and where you are.

It's not always going to be the same...Anon

"When we honestly ask ourselves which person in our lives means the most us, we often find that it is those who, instead of giving much advise, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand"

".....every time there are losses there are choices to be made. You choose to live your losses as passages to anger, blame, hatred, depression and resentment, or you choose to let these losses be passages to something new, something wider, and deeper" Henri Nouwen

"The human race has only one really effective weapon and that is laughter." Mark Twain

"Pessimist: One who, when he has the choice of two evils, chooses both." Oscar Wilde

"Be the change you want to see in the world." ..."God has no religion" Mahatma Gandhi

"Every artist was first an amateur." Ralph Waldo Emerson

"There is no reason anyone would want a computer in their home." -- Ken Olson, president, chairman and founder of Digital Equipment Corp.,1977

"64K ought to be enough memory for anybody." -- Bill Gates, 1981

"The longer we dwell on our misfortunes the greater is their power to harm us" Voltaire

"We don't stop playing because we grow old; we grow old because we stop playing." George Bernard Shaw

"Now, here, you see, it takes all the running you cando, to stay in the same place. If you want to get somewhere else, you must run at least twice as fast as that!"

" It's a poor sort of memory that only works backwards."

"She generally gave herself very good advice, (though she very seldom followed it)" Lewis Carroll

"If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away." Henry David Thoreau

"Experience is not what happens to you. It is what you do with what happens to you." Aldous Huxley

"The most wasted of all days is one without laughter." - E.E. Cummings

"Old age ain't no place for sissies." Bette Davis

"Nobody can make you feel inferior without your permission." Eleanor Roosevelt

"If a woman has to choose between catching a fly ball and saving an infant's life, she will choose to save the infant's life without even considering if there is a man on base." --Dave Barry

"Do not confuse motion and progress. A rocking horse keeps moving but does not make any progress." Albert A. Montapert

"When a doctor recommends you take a test or have some surgery, ask whether the doctor would suggest that his or her spouse or children go through such a procedure. Contrary to popular belief, doctors can't cure everyone. So why cause unnecessary pain with surgery? I think music and animal therapy can help more than most doctors imagine" Shigeaki Hinohara, 97 year old practicing physician at St Lukes International Hospital in Tokyo and teacher at St Luke's College of Nursing.

A Tulip In Recognition of Parkinson's Disease

OTHER ARTICLES ON PARKINSON'S AND NEUROMOTOR EXERCISES

Please note:

The information and/or reference materials contained herein are intended solely to provide background information. Although there may be medical information, this site specifically does not provide medical advice nor engage in the practice of medicine. Under no circumstance will we recommend a particular treatment for specific individuals. In all cases for medical advice about the conditions, symptoms, exercises, treatment, medications, supplements mentioned herein, a physician should always be consulted.

The purpose of this site is to provide information from the personal viewpoint of a Parkinson's disease patient and his caregiver.

DISCLAIMER

The Food and Drug Administration has not evaluated any of the statements contained on this web site unless otherwise stipulated. The information contained in this article is not intended to diagnose, treat, cure or prevent any disease.

Remember that each person's body is different and will react differently to various herbal, vitamin and mineral supplements. T herefore, any supplementation must be administered on an individual basis.

Use the information found on this web site as precisely that: Information. You and your doctor must make any final decisions. This information is not meant to replace any doctor and patient consultation. This information should in no way replace your personal physician's advice.

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